The Truth About Love When You Have a Chronic Illness

My husband and I had what everyone in high school and college always told me never existed: A love so synchronous and symbiotic that we were in one moment, both the best of friends, and the deepest of lovers. There was never a time when we doubted the love of the other or felt that our emotional needs weren’t being met. We loved, laughed, and nerded in ridiculously goofy sync. Life threw us countless financial curveballs and difficult situations, but we found a way to grow stronger through them. Everything seemed beyond magical.

Then, two years ago, Lyme disease struck me. Our lives were turned upside down in a way I never anticipated and could never have prepared myself for if I tried. Everything changed.

One thing people rarely talk about is that sex during chronic illness is a pipe dream – pun very much intended. The romantic intimacy faded and our days became an endless loop of treatments, blood labs, and doctor visits, our closet a jumbled pharmacy. Our identities blurred in a dizzying mess of brain fog, pain, and the stress of the caretaker grind. We became in essence, a single husband and a single wife.

Before Lyme, we cooked romantic dinners and danced to Sinatra on Spotify, and left each other silly surprise mini-cartoons and love notes randomly about the house. This quickly transitioned into my husband helping me stagger in and out of detox baths, and typing excel charts to track the timing of my treatments, or helping compose weekly and monthly symptoms summaries to decipher the diagnostic puzzle that is multiple systemic infectious disease syndrome.

We became emotionally disconnected. Life was a mindless routine. We needed constant emotional support and couldn’t receive it from others due to either an inability to understand, (as the situation is so utterly unique) or a lack of willingness to dedicate regular time to someone not living in their own household.

I took solace in art, music, and creativity. Disconnected from my drained and burnt out overstressed husband, I began a platonic emotional affair with anyone who would spare me the time, and I dedicated every ounce of available brain power left to writing. There was a gaping wound in both of our hearts where once there was lighthearted connection and tender intimacy. The harsh truth about being in a relationship during a chronic illness is the love that you have goes dormant. It may feel like you don’t know your spouse anymore and can’t connect with them. Looking back on your past times of joy eventually feels like looking back on a life that feels lost and foreign.

It is the world’s deepest pain to feel like the fairytale love you enjoyed for six years has evaporated into thin air. The future feels bleak for more reasons than one, and your present feels empty. The divorce rate among couples facing chronic illness is frighteningly high. How does love survive through Lyme? One remnant of our former life was that my husband and I always prioritized daily open sharing of emotions after dinner. This ritual touchstone kept us conscious of the fact that we needed to make some serious changes. Through talking and working together, we found many things that help pull us through:

1. We added more people to our life and invited them into our pain.

In light of my admission to having multiple emotional affairs, this may sound odd, but the presence and healing nature of these friendships strengthened the knowledge that we needed people in our life to stay strong. So instead of reducing contact, we expanded and deepened it with weekly Skype conversations, small groups, and attending a monthly Lyme support group. Instead of hiding our pain and struggle we bared it to the world. Having additional people to turn to for emotional support and companionship eased the burden off the shoulders of myself and my husband to be the only strength. Two overloaded people cannot heal one another.

2. We developed new bonding rituals.

We began reading Christian devotions together twice a day, and a chapter of a book side by side once a week. We joined the same online gaming guild and helped each other level up our characters and complete quests. We engaged in regular tabletop gaming, and every night, my husband reads a chapter from one of my favorite childhood books to me to help soothe me to sleep.

3. We got creative with old traditions.

Without the time and energy to draw and craft notes, we started posting shorter love notes to Facebook. Unable to go out, we began having date nights in, revamping old recipes into healthy gluten free incarnations. Instead of dancing, now we trade essential oil raindrop therapy massages.

This experience is incredibly challenging, but it has taught my husband and I some valuable truths about love:

1. Love is a choice.

When you commit to one another, a crisis can bond you closer rather than tearing you apart. You will never be the same from this experience, but you can choose to grow together. We may meet others who inspire us, stimulate us, fill us with emotions, and share our passions – but we need not let our romantic affections stray to these people, nor let the strain of chronic illness keep us from giving love to one another, burnt out as we are. We choose daily to remember and stay true to the love we committed to one another on our wedding day.

2. Love is a muscle.

Love needs to be practiced, spoken, and exercised. Without regular engagement, it atrophies, but it can be reawakened from dormancy. In order to do this, you learn to speak each other’s love languages. There is only one definition of true love, but it can be expressed and received in many ways, from sharing words and quality time, to a gentle hug, an act of service, and the giving of gifts that reflect a deep understanding of that person’s unique identity.

3. Love is so much more than sex.

Sexual intimacy is lost very quickly during chronic illness, but true love is deeper than that. You can have sex without love because love is not sex. Love is all about quality time and emotional intimacy. It is a soulful intimate connection with the spirit, mind, heart, and personality of the other person…it’s a love for the love that defines the other person. It is sharing what inspires you. It’s finding joy simply by being emotionally connected in the presence of the other person.

4. True love never dies.

If you and your significant other are going through burn-out, emotional abandonment, feeling the emptiness of what was, and looking for hope in the storm of chronic illness, take heart. You are not alone in this struggle. Don’t feel ashamed, guilty, or wrong for feeling confused and empty. We’re all going through this. You are not alone, and there is hope. My husband and I are still going through the fire of Lyme disease together and working hard to keep our love alive. It’s difficult, but I’m here to tell you it is possible. Fight the good fight. Stay strong. Love is greater than Lyme.